Immunotherapy Round #2

Imperfect metaphors

Throughout Noah's cancer journey and treatments, I have (not entirely) resisted using the language of "fighting" and "battling" to describe his experiences in treatment and our hopes for his healing. At the end of this long and arduous course of treatments and scans there won't be a designated "winner".

Lately, however, I have taken to explaining Noah's treatments in terms of a protracted boxing match, another fighting metaphor, I know. But it helps to explain where Noah is at.

Through the various rounds and procedures of Noah's treatment, there have always been periods of recovery. Back at the beginning of treatment, we could reliably count on Noah "coming back" and regaining a certain level of strength and energy before he would be sent into the next thing. There would come a point when he could eat again, when he would gain weight back, when he would run and ride and play with abandon. And then he would be step in for the next round.

By now he has been through quite a few rounds. He isn't bouncing back like he used to.

Since the second round of the stem cell transplant, Noah has battled tummy troubles. There is inflammation all through his digestive system and this makes it difficult for him to eat as he frequently gets stomach pain and bloating. He has stayed thinner than he should be and this makes him weak and tentative. Long gone are the days when Noah would shirk help and insist on doing things himself. And there are lots of activities that we he just avoids because they are not possible without pain.

Like a boxer deep into a bout, Noah is worn down. He conserves his energy and needs all the strength he has to get through treatments.

Immunotherapy update

Noah went back to McMaster yesterday for his second round of immunotherapy. He will receive the same medications on the same schedule as with the first round. Once again, our hope will be that things go well and that there will be no major side effects.

If you'll recall, this was our hope for the first round as well. Because immunotherapy does not destroy cells within Noah's body in the same way that chemotherapy or radiation did, it is not uncommon for neuroblastoma patients to face great pain during the hospitalized part of the treatment only to come out with most of their health and strength intact.

The former was certainly true for Noah over the course of his first round. Almost right away, Noah was given a steady infusion of hydromorphone and oral Benadryl, which is to help prevent anaphylactic reactions to the Unituxin, the main immunotherapy drug. By the second day, Noah had spiked a fever and he was thrown on an antibiotic infusion to keep any infections at bay.

It is difficult to predict how any patient will respond to the treatments Noah is being given and so the first round of immunotherapy is typically the worst in terms of managing the unexpected. By the third day, Noah had developed a bit of a tummy ache. Though now it is obvious to all involved that this was a serious development, at the time it just appeared to be another side effect and on the morning following the four days of infusions, Noah left the hospital tired, in pain and bloated.

That the sore and bloated tummy were signs of something far more serious became clear almost as soon as Noah arrived at home.

We have been given a list of concerns for which we should immediately call the hospital. Noah's insides began to violently reject all of their contents in a way that was alarming and so we called oncology and, within hours, we were back at McMaster, only this time in the Emergency department.

What was causing Noah's abdominal pains and problems wasn't clear but what was obvious was that Noah's innards had stopped working. As I was told, it was if they had "gone on strike" and were no longer moving things through his system. Because of this, Noah was not permitted to eat or drink as anything that entered his digestive system would merely sit in his stomach until it would no longer be tolerated.

This was a bad scene. Noah hadn't eaten much in the days leading up to his expected discharge and his skinny body was losing weight once again.

And, of course, the cause of the pain and bloating and suffering needed to be identified. If it was an infection, then - hopefully - it could be treated. If, however, the stomach issues were caused or exacerbated by the immunotherapy, this would have consequences for and raise questions about how the next five rounds of immunotherapy would proceed.

Noah's stomach was x-rayed once again. This was relatively painless. An ultrasound of Noah's entire digestive tract along with every other organ in his abdomen was also completed. This was incredibly painful for him.

The results of the imaging done showed what was to be expected - inflammation - but not much else that explained the problems.

Late that Saturday night we received results from samples taken earlier in the day. Noah had contracted a C. difficile infection. How or when this happened is difficult to ascertain. It could have had something to do with the antibiotics he received after spiking a fever but that can't be confirmed.

If you don't know what C. diff is, look it up - I will spare you the details here. Needless to say, it is nasty and horrible and it meant that Noah would be put on a 12 day course of antibiotics and that he would need to spend a few extra days in the hospital.

Sadly, it also meant that our hopes for a quick and speedy bounce back would be dashed. Noah came back from his first round of immunotherapy about as thin and weak and emaciated as we've ever seen him. He didn't have the strength to walk, he didn't have the strength to stand and he didn't have the strength to sit upright in a chair. He needed a foam pad to sit on uncushioned surfaces without pain.

The nasogastric tube was back and, once again, we were working to build him up from the ground up.

Another new year

And now Noah is back at the hospital for his second round. We hope and pray that there are no hiccups this round, that his pain is managed and that there are no unexpected complications. Having had C. diff once, it becomes more likely that he will contract it though subsequent rounds and we hope that, with this knowledge, it can be caught and treated before things get as bad as they did last round.

This, hopefully, will shorten the recovery time. Perhaps, Noah could get a bit more strength back and those pieces of Noah that come out only when his pain and discomfort wane will begin to shine a bit brighter once again.

Exactly one year ago, Kim and I were worried sick about our little boy who was suffering inexplicable waves of pain that stole his joy and kept him awake through all hours of the night. In two days it will have been a year since that third and final emergency room visit led to the x-ray that revealed the growth that resulted in the diagnosis of high risk neuroblastoma which has dictated so many of the days of Noah's life since.

And when we were told the details of the course of Noah's treatment, what stood out (still stands out) most of all were those words "prolonged and intense", words that perfectly (horribly) describe everything that has happened to Noah between then and now.

I don't know how to describe the way we feel about the last year. It has been horrible. Noah is beautiful and wonderful and a treasure that I would cross heaven and hell to win. I don't deserve the gift of his joyful face on Christmas morning when he realizes that Santa came and ate the cookies and drank the milk he left out the night before. My heart broke when, on the way to drop Kim and Noah off at the hospital after spending an evening playing Kerplunk and Pictionary while laughing by the Christmas tree, Noah sadly expressed his desire to go home - not to the hospital.

My hope and prayer is that in the upcoming year, my delightful and wonderful boy will be granted healing and restoration. That when this horribly prolonged and intense course of treatment comes to an end that he will be cancer free and that his life will carry into the next chapter where cancer doesn't drive the plot. That the glimpses of beauty and wonder that are too bright to be hidden by pain and sadness will take their rightful place at the forefront of Noah's life. That he will get the chance to be a regular kid.

That the favour of the Lord our God will rest on him. On our little Noah.

Dear God, heal my boy.